Parents of children with congenital heart disease

Funeral, post mortem & inquest

The death of a child is very traumatic and difficult for parents. The funeral arrangements must be taken care of, and distress can be heightened when a post mortem or inquest is required. The Children's Heart Federation has a factsheet on 'Bereavement'. ARC (Antenatal Results and Choices) offers support and information for parents who terminated a pregnancy or lost their child before birth.

Both parents we interviewed chose a non-religious service for their child's funeral and tried to keep it light hearted and upbeat by singing children's songs, such as 'The animals went in two by two' or 'Who put the colours in the rainbow'.

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Noah's mother explains that his funeral was an opportunity for many friends and family to learn more about their son who had been in hospital since he was born. His parents could talk about him and explain to family and friends that although Noah had spent all his time in hospital he had been happy most of the time.

Luke's mother, whose son had died in hospital after surgery, was able to bring him home the day before his funeral, which had been so important for her. Family and friends were able to visit Luke and she was able to spend a lot of time with her son. She said that it had helped during the grieving process to have spent this time with Luke.

When the cause of death is sudden, unexpected or unknown, a post mortem may be required. Parents have the right to refuse a post mortem that is not ordered by a coroner. Noah's parents chose not to have a post mortem and felt supported by the hospital in their decision.

When a coroner orders a post mortem it is a legal requirement and parents cannot refuse. Luke's mother was very upset at the coroner's request for a post mortem, but was later glad that it had been done because it answered a lot of her questions. Her GP was very supportive in talking through and explaining the pathologist's report with her.

An inquest in to the cause of death may also be held. This is a public legal inquiry. Luke's mother chose to have an 'open' rather than a 'closed' inquest, which meant that they could attend. It was held seven months after Luke's death; she explains what happened and what it was like.

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Last reviewed July 2018.


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